Patient Stories | Jamie and Caudal Regression Syndrome

Jamie Finds Passion for Sled Hockey Years After Diagnosis of Caudal Regression Syndrome

In Latin, cura personalis means “care of the whole person.” 

This is the guiding approach to patient care for pediatric urologist Pramod Reddy, MD, and the team of experts in the Division of Urology at Cincinnati Children’s. 

“That’s at the center of what we want for every single patient whom we are privileged to care for,” said Dr. Reddy. “To allow them to live the fullest life possible and not to be defined by their underlying diagnosis.”

For Jamie Benassi, 18, the diagnosis was caudal regression syndrome (sacral agenesis), a rare congenital disorder that prevented the proper development of her lower body. 

“All the nerves that go to her bladder, her bowel and her legs don’t work,” explained Dr. Reddy, who began treating Jamie when she was 3 years old.

Discovering Sled Hockey, Finding New Confidence and Independence 

A patient at Cincinnati Children’s since she was born, Jamie—along with her parents, Tom and Allison—have never let the condition prevent her from living the fullest life possible. 

And for Jamie, her life is quite full. She keeps busy as a high school senior. She plays sled hockey year-round as a member of the local Cincinnati IceBreakers and US Women’s Para Hockey teams. 

Over the years, she’s received treatment from the Cincinnati Children’s urology team, as well as experts from the Fetal Care Center, Gynecology and the Colorectal Center. She’s gotten to know her way around Cincinnati Children’s, and now she’s getting to know her way around the United States.

Most recently she traveled to Green Bay, Wisconsin, where Jamie’s hard work over the years was rewarded. Her team won the gold medal at the Para Ice Hockey Women’s World Challenge in August 2022.

Jamie recalls being tentative—even frightened a bit—when family friends first introduced her to sled hockey at the age of 12.

“I didn’t know adaptive sports was even a thing,” said Jamie. “It looked terrifying because it was really fast and they hit each other."

But then she attended a practice session for the Cincinnati IceBreakers, a sled hockey team for people with physical impairments, and her life was changed forever.

“I showed up to the ice rink and all the equipment was laid out for me,” said Jamie. “They put me on the sled, pushed me out, and that’s when I realized hockey is what I want to do in life.”

She also discovered her competitive spirit and in her teens worked hard to make the US team. She’s made close friends and enjoys traveling across the country to compete in tournaments and participate in hockey camps.

“That’s actually one of my favorite parts of it,” said Jamie, recalling the different places she’s gone, from Phoenix to Buffalo.

After spending so much time in the hospital at a young age, Jamie is grateful to be able to travel independently now and see different parts of the country.

“I was in the hospital a lot when I was younger for major surgeries,” she said. “But I’ve had awesome nurses, and it’s been a great experience. It’s gotten me to where I am now.”

Best Decision Ever Made

Her parents couldn’t be happier for their daughter. From the day she was born, Tom and Allison only wanted the best in life for Jamie. They have long-encouraged her now growing independence.

The best decision they ever made, they said, was to have Dr. Reddy and his team perform the Mitrofanoff procedure and bladder augmentation surgery in collaboration with colorectal experts who performed the Malone procedure a year earlier when Jamie was 5 years old. 

The surgeries helped Jamie achieve a better quality of life by correcting her incontinence, providing an alternative to urethral catheterization and increasing her bladder volume.

“It put her in control, basically,” said Allison. 

Today, Jamie is one of many patients who enjoys the benefits of the Urogenital Center, where pediatric urology, pediatric surgery and pediatric gynecology experts work together to treat the most complex cases. Curtis Sheldon, MD, is the founding director of the center. He mentored and taught Dr. Reddy years ago, along with other junior colleagues.

The Most Important Person is the Patient 

“The family hears what all the different services are planning to do, and they can ask questions of us at one time,” said Dr. Reddy. “We all check our egos at the door and everyone’s got an equal vote. No one is more important than another because the most important person in that room is our patient.”

Over the years, Jamie’s parents have seen the benefits firsthand and appreciate the ongoing support. They also value the close proximity to such expert care.  

“We’re lucky we’re 20 minutes away,” said Tom. “We definitely feel like we’re spoiled when we go down and meet other families. They ask where we’re from and we say, ‘right down the road.'”

This could change, of course, as Jamie considers different colleges and possibly moving away from Cincinnati. Wherever she goes, though, Dr. Reddy and team will be there to provide continued support. They will help coordinate her care until she transitions to an adult facility at 21 years old.

Dr. Reddy is confident that Jamie will continue to do well wherever she goes in life, citing her can-do spirit and her positive outlook.

“It’s not unusual, when you’re born with a fairly significant congenital malformation, to make yourself a victim. Jamie has never victimized herself,” said Dr. Reddy. “She has always said, ‘I’m going to do what I want to do.’ She’s got sass and she’s got spunk. And when life gives you a tough hand to play, you need that sass and spunk to be able to overcome those challenges. She’s done just that.”

In fact, Jamie has done more than that. She’s overcome challenges, and she is thriving.

“Look at her—she’s a gold medalist and a world champion,” added Dr. Reddy. “Few people can claim the accolades that she’s earned by herself. These were not given to her. She’s worked hard to get them.”

Before you can work hard for something, you need to know what you’re working toward. According to Jamie, if you don’t try, you’ll never know what you can accomplish.

“Just go for it,” she said. “I think you just have to get over [any] fear and do it. I’m passionate about changing my life. It doesn’t have to be hockey. It can literally be anything that you’re passionate about.”

(Published December 2022)